Welcome to Our House - The Analogy ©

Having a baby is special. For some, it’s a lifelong dream, for others, a wonderful surprise. Either way, many of us have thought about taking this journey and whether it’s planned or a pleasant surprise, we all have preconceived ideas about what our child will look and be like. But what if it isn’t what we planned or expected? This is a short story I have written for parents who have or are expecting an exceptionally special child.

Welcome to our House – An analogy

After many months of dreaming, you finally decide it’s time. You are going to build that perfect house of your dreams. You have saved and saved, and now it’s time to put your plan into action. You find a wonderful, perfect piece of land in the city. It’s exactly what you are looking for – because it’s the plan that everyone talks about. You envision the all brick house sitting on luscious green grass, surrounded by a white picket fence. Inside is a marble foyer leading into a family room with beautiful oak hardwood floors. Granite lines the kitchen counter tops and there is an island sink in the middle. Upstairs has four perfect bedrooms and the master bedroom has an ensuite bathroom and an enormous walk-in closet, of course. It’s truly a dream come true, and it’s only a matter of time. You purchase the land and think to yourself, in nine short months, you will have it all.

But suddenly your agent calls to tell you, the land is not properly zoned, and the city has not approved it for building your perfect home. They have instead, given you land in the country, where an old country home sits. You are absolutely devastated, your dreams vanishing right before your eyes. You know you can’t back out now, you need a place to live, and despite it not being what you wanted, you know that somehow you will manage and that you can continue on.

You tell everyone what has happened, and everyone is disappointed, some even offering their condolences. You know that everyone else has a nice city home, and that was what you had planned, but you have to come to terms with the fact that you must learn to live in the country.

You go to see the property every month until closing and something funny happens. You start to fall in love with the place. The air is fresh, it’s peaceful and serene. There’s a pond on the land, and the house, though not a new all brick home, is quaint, and has lots of hidden potential. You soon realize it’s not a awful place, it’s just a different place. It’s slower paced than the city, less noisy and flamboyant, but it’s beautiful none the less. And in the process, you soon realize you may even get to meet some new and wonderful neighbours.

Its closing day and you suddenly find yourself full of anticipation, but you are still a little worried. After all, it isn’t what you had originally hoped for, and the house may need some repairs. But you are determined to accept it, and tackle everything one step at a time. You open the front door, and suddenly you are thrilled with what you see. The house is lovely, and has lots of character. The rooms are smaller but it’s decorated with beautiful attention and detail. The kitchen has marble instead of granite, and the bathroom has a soaker tub instead of a Jacuzzi. There isn’t a walk-in closet in sight, but the rooms all come with an indescribable view. Somehow, you just know that it was always meant to be and that this is now home.

This is my analogy of what it will be like for people who discover that they will be caring for a baby with Down syndrome. For us, it is not a terrible place to be, it is a journey full of surprises, milestones and discovery like any other child. And as the story suggests, sometimes it’s only a matter of ‘point of view’, and surprisingly, once you have been there, you don’t want to be anywhere else. The journey, like all others doesn’t come without some bumps in the road, but once you find your way, it’s all about the place you discovered, in most cases - quite by random chance
Author: Sandi Graham-McWade, Copyright

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Monday, December 12, 2011

My Journal - Week 121 (12Dec11)

Flashback to the DDSA 2011 Christmas Party

This post is slightly bitter sweet for me.  Firstly, I'd like to say - My family had a fantastic time at the 26th November 2011 Durham Down syndrome Association Christmas Party.  Being the Executive Director and Acting Vice President of the DDSA, I was only minimally involved with the actual Christmas Party Committee (who did a fantastic job of course) but I knew of the details and "going's on" regarding the planning of this wonderful event.  My girlfriend and her husband (however) are the Directors of Events and I must say, did a mighty fantastic job on the finer details that I was not a part of.  At the event itself though, I did decide to bring my Nikon camera and ended up taking several (140) photos of each and every child with Santa as well of course, several of my own children.  What else is the "Mamarazzi" (that's me) to do?  I love photography. 

The second half of this post is the unfortunate bitter part to the sweet.  It is with a heavy heart that I must say "Goodbye" to the DDSA as its Executive director and acting Vice President.  While I have inundated myself with several projects and life in general, there are only so many things I can "pull off" while still keeping two key components (my sanity and family) intact.  The actual work load was never the difficulty for me, (I enjoy things busy and hectic) but there were a few unpleasant circumstances that I had to deal on more than a few occasions, during my short tenure.  In any other "paid" environment - some might just "grin and bear it" but in the world of freely volunteering, I couldn't just stick my head in the sand in ignorance.  Without getting into the nitty gritty details, sufficed to say, I was displeased with a few of the occurrences and being that I am a boisterous and extroverted person at the worst of times, I couldn't hold my tongue.  Sometimes it takes a bigger/braver person to speak up and know when things "just aren't right" and need to be straightened out.  I do not live by the philosophy "ignorance is bliss" (fortunately?) and as such, when there's something "not exactly right", it behooves me to do something about it.  On the flip side to this type of thinking, it can cause unwanted waves if there are those who believe that boats are not meant to be rocked.

Having said all that, I did want to post a few of my favourite 'fun-tastic' photos that I took during the three hours we were there having Fun fun fun!!

(Note:  Hunter has an older girlfriend who affectionately refers to Hunter as "her boyfriend" - her baby brother attends my YMCA Play to Learn Play/support Group).

Who me?

Thank goodness he's holding Hayleigh....

It's just the beginning they said!

Phew!  Santa's making his rounds!

A dance with "my girl"!

No-one else but Franny and Me!

We'll boogie the afternoon away!

Check us out!

Shall we go for a walk?

Yep, just the two of us....

Hayleigh & Santa

Not liking this Santa lap thing

Humm, well I'll tolerate it just to tell him how good I've been.

Mommy has a gift for Santa??

Ahh!  She just wanted to tell Santa what she wanted fro Christmas!

Friday, December 9, 2011

My Journal - Week 120 (09Nov11)

The Things He Says.... (On his own terms, of course)

I know that Hunter's vocabulary is (what I refer to as) "a Shy Vocabulary".  Once we deemed him a "silent learner" it wasn't much of a stretch to guess that he would be the kind of child who wouldn't preform on cue, who would only do things when 'he' was ready, etc. etc. etc.  Well, today was proof of these facts.

I made Hunter a picture book more than a few months ago, with photos of things in our home (common to him) such as, a photo of myself and the rest of the adults in the home, his favourite toys, his favourite foods etc.  While we have several books (with the very same things) it was more personal to Hunter to have a book that Mommy made with "real life Hunter things and examples".  In the beginning, we would sit down with the book, turn the pages and say the items on each page.  Repetition repetition repetition.  I guess, without having a parrot or mocking bird, it was difficult to gauge just how much Hunter was "learning" from me.  Well, the parrot decided to just "speak up" today and tell me ALL the words in his book!!  And if that wasn't shocking enough (for one day) he also - after saying "bib" while pointing to the photo, ran to the couch and promptly picked up his bib and brought it to the picture then gave it to me.  I hardly give this example descriptive justice - he literally pointed to each and every picture, and said the word.  It went something like this:  [pointing to apple] "apple", [turn page - pointing to ball] "ball", [turn page - point to bib] "bib" (run get bib), [turn page - point to shoes (his favourite new word)] "shoes"... he stayed on this one for a while, all the while saying "shoes, shoes, shoes".... then to the best one, (yes it gets better) [pointing to the brush] "brush" and mimicked brushing his hair!!  And so it went, on and on, over and over.

Is wasn't simply a matter of the words, it wasn't a matter of the comprehension, it was the fact that we (his EI Jenn and the whole family) had been trying to figure out how to teach him matching (moving from the vocab stuff for a while after a few months of demonstrating lack of his interest) and yet he very stubbornly and defiantly showed us in no way was he willing to do matching (he threw the cards at Jenn the last time she was here in a very typical two year old kind of way).  So, when on HIS OWN TERMS, he decided to show us this, (as it always happens) it made me laugh and sigh.  This is just the way Hunter is.  Shouldn't I know this by now?

Hunter is getting close to the point (where I believe Girls just differ and do this much earlier based upon gender) of wanting to do the "let me" stage.  He is much happier to try and do things for himself now, where as before (even though all the while capable) he wanted Mommy or Grandma and Daddy to do "it" (various things) for him. 

I am delighted that these progressions are on going, sad that it means he's growing up fast, but satisfied that he's happy and not pressured or feeling as though he's been made to do things that are no longer fun.  It's hard to prove the many things we see on a daily basis to those who need to see him do these things, when they are short lived and he's a genuine camera ham.  Do I dare whip out the video camera or digital SLR?  Nope, my son is my son and knows full well that his mother is the official Mammarazzi.  With that said, it's hard to get natural stills of my boy - he's a glamour child who lives for the camera.  Did you know he's got the word "Cheese" down pat??  I wonder why.....  I don't even say a word when I begin to take a photo, Hunter just pipes up automatically, "Cheese" when I snap a photo.  How sadly and delightfully appropriate all at the same time. 

Anyway, much goes on with him daily and it's hard to just squeeze it all into one post, but these are the main things as of late and I thought to include a few photos (of both kids) from recent days.

Just for the record - It would appear that Son's do look like their Daddy's....

I will brush my own teeth, okay Daddy?

Let me try this "Prunes and Oats" thing...
Ohhhhhh!  Taaarrrrttttt!
Oh ya.... TART.  (Note: Hayleigh did this after each & every bite)

My little girl sitting up by herself....
Having fun seeing what sitting up can do..
And just for fun (each time) throwing herself backward and laughing!

Sitting with Santa and the Durham Down syndrome Assoc. Christmas Party

A fun moment playing in her bassinet
And then caught on film "looking"!!

Keep checking!  And PLEASE - Do visit my new Photography Blog... http://www.randommomentsphotography.ca
My RANDOM photography IS for sale through another site (also linked to the new blog) or visit directly here:  http://www.purelyrandommomentsphotography.com

Comments are always welcome and encouraged.

Sunday, November 13, 2011

My Journal - Week 117 (13Nov11)

This Sunday was ALL about "DDSA" Speech!

Speech is a very integral part of life and having Down syndrome can sometimes complicate speech in various ways.  Delays in speech are often one of the the most troublesome problems for many youngsters with Ds and other times, hearing issues and as well as low muscle tone can complicate speech further. 

We (the DDSA - Durham Down syndrome Association) decided to create another partnership event (our 2nd one) with our local speech pathologist to provide free Speech Assessments as a service to our Association members with further sessions at 50% off (paid for by the DDSA).  Jill Clements-Baartman is the Owner of TLC (Talking Language Communication) and she is a dedicated Speech Language Pathologist.  She has also been Hunter's "speech path" since he was about 18 months old. 

When we first learned about Jill, we decided to take Hunter to see her for an initial assessment to see where he was with "language".  At that assessment, Hunter was doing great and did not need any additional services in terms of speech but I knew that we should definitely re-visit that area again for a future follow up assessment after he turned two.  With this partnership we had created through the Association (making "speech" a priority event for our members) I decided to take advantage of the very same service we put together and get a new "FREE" assessment for Hunter.  Turns out, we are still on track, falling in the ranges of what is considered typical in terms of speech for our son. 

Even BabyCentre advises parents not to panic if their toddler (aged two) isn't speaking the way other children are, charts or people in general think they should.
BabyCentre says:
"Don't rush to consult a speech therapist if you have no idea what your 2-year-old is saying half the time (or if you understand perfectly, but Grandma and the babysitter are baffled). Speaking involves a lot of coordination. Kids this age commonly lisp, stutter, and mumble. But certain speech problems are considered red flags. If your child never imitates your words or speech patterns or drops particular consonants consistently, mention it to her doctor. " 

EVERY child is different when it comes to language, expressive language and communication.  It is important not to panic and to know when one should have their child assessed and also if there are obvious delays with language.  Things to consider are, is the child mimicking language and sounds?  Is he or she expressive?  Is he or she communicating needs in other ways?  Is your child using more or different consonants and vowels as time goes on?  Is there an obvious and excessive amount of frustration in your child due to lack of language?  Ranges are normal and obvious in the general population, as they are within the Down syndrome community.  Parents have to remember, their child will talk - it's only a matter of time.  I believe "How" they talk is what parents should focus on rather than "when".  To me, pronunciation and building vocabulary should be more important than worrying about how quickly their child starts speaking with more than one or two word combinations.  As well, it's key that we don't frustrate our children (and ourselves) with trying to push language in a way that is counter-productive and possibly hindering.

Here is how our DDSA assessment went during "fun time":
(We went together with my Girlfriend Penny and her Son Vaun who also has Ds)

I'm waiting for my teacher Ms. Jill!

I've been here before and we had a blast!

Some fun  and colourful cards for me to see before we go in.

Since my Buddy Vaun is with me we get the BIG room!

Look at me!  I'm a STUDENT!

Uhhh, I wonder what that is up there?!  (A Toy Holder)

Hey Vaun, let me show you how it's done!

Yes!  That's it!  Let's make music!

What on earth is this thing?! It rolls and makes sounds....

Time to put away the toys for the day.

Ms Jill is talking to us, helping us to learn!

I'll show Vaun his belly - I can teach too!

They all are lying down!  Maybe I should lie down too?!

I'm getting good-bye kisses from Ms. Jill!

And I'm giving Ms. Jill a good-bye kiss back!

Thursday, November 3, 2011

My Journal - Week 115 (03Nov11)

Down syndrome Awareness (week) is about Educating.

I usually spend my spare time (and other time) teaching and educating those who want to know about Down syndrome.  With this first week of November, it was very important to me to do that little bit extra in terms of "educating".  So, with it being a week of Awareness, I was very flattered when Dr. Meghann Lloyd (Asst. Professor) of the University of Ontario Institute of Technology asked me to present and teach to her 4th year university students taking a course called "Motor Behaviour and Developmental Disabilities" through the Health Sciences Faculty.

I spent 2 hours talking to her 4th year students about everything relating to and about Down syndrome.  These students (for all intents and purposes) will be working in the health care industry in one respect or another.  Either, working on Doctorates, Nursing, or Clinical Health applications such as Kinesiology. 

Together with Hunter (and John) our presentation was a huge success!  I believe that having Hunter there brings a type of realness to the presentation that would have otherwise not have been there and just been a "talk".  Everything went so well that I have been asked to present every year (for the same course) at their University.  Interestingly I have also been asked to teach at the University of Toronto by my Family Physician Dr. D. Mark who happens to be a Medical Board Director as well as a Teaching Physician. 

I thoroughly enjoyed teaching that morning - Teaching was an original career choice when I went to University so long ago.  Now it would seem I am just teaching where ever I go or work!

I am educating a different crowd (future health care practitioners) and it is my hope that in doing so, it will break barriers and also prevent misguided and often prejudicial information to the people who need it most - patients and new parents.

Monday, October 31, 2011

My Journal - Week 115 (31Oct11)


How was your Halloween?  Ours was fantastic from the Sunday to the Monday evening!  Check out what we did for our weekend.... (There are more photos in my Facebook album - 44 to be exact).

Cupcake for me??

Roar!!  I'm a Dragon, Vaun's a Dragon... we are twins!

Daddy... can I have another cupcake?!

Roar!!  I'm an awesome Dragon!

Family Portrait Oct302011

Check me out... I can fly!

What?  This horsey doesn't like Halloween?
If you look real hard you can see me on the Wagon Ride!

Knox Pumpkin Farm - The end of the day


A Scary Pumpkin - Miss Hayleigh!
Happy Scary Pumpkin!
"Roar"... Yes I like to roar!!


Hunter after Trick or Treat... "Daddy??  Wanna go again??"

"Umm Daddy??  You okay?  We don't have to go again...."

Yay for Hayleigh!  Her 1st Halloween!

Looks like Hayleigh loved it!
Another sucessful Halloween for everyone!  Mostly for Daddy, who gets to eat all the candy.  Maybe if Hunter is lucky, he may get a Doritos chip or two from Mommy!  And, I don't think Hayleigh was ever the wiser or upset that she wore Hunter's first year costume - It's all about sharing after all!  Fortunately for Hayleigh, it's not always going to be about "hand me downs".  This Christmas we got her a new personal outfit... since (a) Hunter (at three months) wore a newborn outfit which would NEVER fit a 16 pound 4 month old baby named Hayleigh, and (b) she needs a girly Christmas outfit - not a boys!!

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